Tragic

One year ago today I was flying back to the US with both kids to take Waverly to CHoP.  It was the beginning of a very long journey.  These next few months are going to bring up a lot of memories as anniversaries of diagnoses arrive.  I just heard from a friend who has a little girl Waverly's age with Sanfilippo.  They received the devastating news that their baby boy also has Sanfilippo.  I was hoping and praying that he would be spared from this horrible disease.  I am so sorry that she has to face the loss of 2 children, too.
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kelly said…
a moment when your worlds forever shifted. i just hate this for you both...hate that your beautiful children are being cheated out of what could be.

it's often unbearable to live in a world where shalom is broken...
February 18, 2009 at 12:32 PM
Anonymous said…
Thank you Shannon for thinking of us. I think of you and your family often as well. I was going to call you and realized I do not have your phone number. I called the doctors up at uke to see if I could send Hannah and Aiden's records up there so now I am just waiting for a call back. Please send me your number. Thank you so much!
February 18, 2009 at 1:44 PM
Angi said…
I am sorry to hear that - my heart aches for you both tonight...
February 18, 2009 at 10:05 PM
Misty said…
Oh Shannon I just posted about you and Penny on Will's site as well. It is such a tragedy for us to endure but when it is multiple siblings it must be devestating. I think of you all alot and you are in my prayers. I am so sorry for the upcoming unhappy anniversaries, it is all just so difficult. I would love to hear from you, if you would ever like to please call me. Keeping you in loving prayer, Misty
www.miracle4will.com
February 19, 2009 at 12:01 PM
The Scherms said…
I don't know you, but came upon your blog through Carrie Jenkins'blog.
I will be praying for you and your family. I can't imagine what you go through everyday. It is clear that God has given you grace and special strength, just through reading your perspective, Holland vs. Italy.
May God grant you extra grace and strength in the coming days!
February 19, 2009 at 5:45 PM
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